[mothy19]

Wow, there are other people out there that experience the same problems. I think that is one of the most difficult parts about TOS is finding someone who can relate to the problems.

The biggest problems I have had with TOS are not being able to use my right arm as much as I would like and also sensitivity around my right shoulder. I cannot put any weight on my right shoulder without feeling discomfort. Most of all, from time to time, I get a pulsating lump right above my right clavicle. That drives me crazy!

I have done the Botox injections by Dr. Jordan with only temporary relief. I have considered surgery where they remove your top rib.

I have a couple questions...

1) For those who have had the rib surgery, do you recommend it? Will it bring relief to my pulsating lump (or muscle spasm)?

2) For those who experience the pulsating lump, how do you get rid of that?

Originally Posted by johannakat

So I had a revelation today, and wanted to share.
Let me start with a quick summary for anyone who doesn't want to look through a bunch of posts to figure it out. I don't want to lead people astray who are having different symptoms than me.

1. I just produced baby #3 in Aug '05. I have been either pregnant, nursing, or both for about 4 straight years now

2. March/April of this year while and after doing some inversion poses in a vinyasa flow yoga class I felt severe pain in my arms, wrists, and the front of my shoulders. Pain also shows up as burning in my wrists (like a fireball is right in the center of them) when I am on the computer. I can't put any pressure on them, lifting myself up, closing the back door of my van, or anything.

3. Originally dx'ed as tendonitis and/or wrist sprain, went to PT for 2 months. It was helpful but also painful- the strengthening exercises would always make my traps hurt and my triceps. WHen I told the PT this, I was always told my psture wasn't good enough.

4. June '06 I passed a nerve conduction study, and was finally dx'ed as TOS (with different ortho) 12/10 on right side and 8/10 on left side. Pulse disappears very quickly on both.

5. Went to same PT place for TOS PT for 1.5 months. It only made me hurt, so I quit.

6. September '06 Went to see Dr. Jordan at ortho's suggestion to find out about Botox.

7. Dr Jordan gives me scalnene test block, claims that I have improvement and then suggests botox next. I was not quite convinced I had had improvement with the test block, but knew that I would try botox before surgery anyhow, so I went along for the ride.

8. Botox injections hurt very badly for 2 weeks, do nothing until about a month after- at which time I feel markedly better.

9. November '-6 to present- I want to take advantage of my loosened muscles, and I feel like I can't sit up striaght becaus emy whole back is just out of whack. I start seeing chiropractor and hellerworker- Chiro loosens up my neck significantly so that I can look to both shoulders again, explains to me that the weird pains I have been having in my back are muscle spasms (can you say clueless?) and helps work them out. They are presently better but not gone. The Hellerworker finds that my neck muscles and arm muscles are really tight which I expected, he also finds that the muscles on the sides of my ribcage are very tight and tell me he thinks this must certainly be contributing to my problem because he has rarely seen them so tight.

10. SO, on Dec 22 I saw Dr Jordan again, he says my pulse is back in the right arm after being goine for so long, congratulations on the improvement, come back in 2 months he wants to put more botox in before I get back to where I was. I am pretty psyched and ask to be sent back to PT because I know I need some help and feel like I am on the brink of progress.


11. Today I see Joyce Wilkinson and she says some things that really click for me. Therefore I want to share them because I haven't seen anyone else really say much about it and maybe it will cliock for others.
a. The muscles on the sides of my rib cage ARE really tight.
b. Sometimes the muscles of the neck and shoulder get tight because the ribcage is being pushed up from below and that's what really needs to be fixed before the scalenes and pecs have anywhere to lengthen to
c. and this one didn't click but it made me very very happy- there is a spot on my back that is super tight and that spot is probably what makes me feel like I am constantly stuck bending forward (unable to sit up straight). Now why didn't my chiro find that?
d. she found some "disfunction" in my wrists and they are really tight, probably contributes to the burning pain.
e. My pec minor is really really tight and probably has a lot to do with my issues.


SO...I took all of this in and chewed on it this morning. I have a couple of observations in no particular order.

1. Maybe Dr. Sanders is really onto something with his pec minor release surgery process. If others problems are more like mine it really might be a better answer than fixing the scalenes.

2. I think If I stuck with the hellerwork for long enough that might have been the right answer, too, because he was working to put my ribcage back in the right place and loosening the tension in my muscles. He found tension in all the same places as Joyce did, and had similar conslusions.

3. Botox in the scalenes and the pecs and traps alone probably wouldn't fix a problem with tight lats and serratus anterior.

4. My idea that sharon butler was totally on the right page was also right- it was her email FAQ that said for burning wrists you should stretch the lats and the armpits. Those are the areas that are so out of whack for me, and stretching them really does help the wrist pain when I get it.

Anyhow...I might come up with more later, and I'll come and update this. Joyce seems to really be the real deal. If you can't get to a similarly qualified PT, I would highly suggest hellerwork.

As always- this is just some things and thoughts that have worked for me, And I am no doctor. Just read and try to think.

Would also love to hear from anyone who has had pec minor release instead of the rib resection or scalenectomy, or anyone with other interpretations of my thoughts adn dx'es. I am putting it out there because I thought it was interesting and tried to make some connections that might help others.


happy new year!!!

Johanna

[Jomar]

I haven't had either of the things you asked about so I can't really help with the answers to those specifically.

are you having or doing any good PT or posture /body work?

Have you had any imaging ? x ray, MRI or things like that?
mainly to rule out any other causes or actual shoulder injury/cause.

Has drs said if yours is vascular , neuro or a combo type?


Oh and id don't know if you noticed our useful sites/info thread- I added the links to our polls and surgery, articles there for easier searching too.
http://neurotalk.psychcentral.com/showthread.php?t=84

[DiMarie]

Hi Monthy and welcome to the forum family,
I don;t know if it is the same but I ahve a twitching in the back of my bicep.
Where the nerve inserts into the muscle.

I have a real tender spot in the upper back/trapizis that feels like a butcher knife in it. Tight spasms across the shoulders and wiings,

I use trigger point injections that help, and also valium as a muscle relaxant.
For sort term, biofreeze and my lidoderm patches every day.

This controls a lot of my problems. Pain I have topomax and percocette.
Hope you can find relief,
Dianne

[ocgirl]

Mothy,
I have swelling above the clavicle. From what I understand it is swelling from compression of blood vessels. It can be serious. Don't press on it.
I had swelling above both clavicles and a prominent pattern of veins on my chest after 4 years of tos and my arms were swollen also.

Dr Ellis was always very concerned about the swelling above the clavicle and arms. Because of my symptoms Dr Ellis recommended a rib resection.

Do your arms swell or turn blue or white?
Please see a tos expert to evaluate the swelling.
Surgery helped me about 50% which is what Dr Annest told me pre-op
Ocgirl
__________________________________________________ ____________
"Intermittently, minor swelling and discoloration can be present; if severe, they can indicate a primary blood-vessel problem, which, though very rare, requires rapid intervention

Given this plethora of symptoms, it can be difficult to arrive at a diagnosis. Involvement of the head, neck, arms, and front and back of the chest with pain and occasional swelling produces a clinical picture that is often difficult to integrate for the inexperienced physician." W. Ellis M.D.
www.doctorellis.com
__________________________________________________ _______________

[mothy19]

Thank you everyone for your prompt responses! Jo55, thanks for redirecting me to the "action" sites!

ocgirl- I do not have any type of swelling above my clavicle or in my arm. I have a lot of numbness and pain around my right arm and shoulder. Drs. have suggested that it is vascular related. I plan on getting an MRI - Arthrogram soon.

I'm glad that you have found some relief in your surgical procedure. How long were you out of work/school/physical activity?

Originally Posted by ocgirl

Mothy,
I have swelling above the clavicle. From what I understand it is swelling from compression of blood vessels. It can be serious. Don't press on it.
I had swelling above both clavicles and a prominent pattern of veins on my chest after 4 years of tos and my arms were swollen also.

Dr Ellis was always very concerned about the swelling above the clavicle and arms. Because of my symptoms Dr Ellis recommended a rib resection.

Do your arms swell or turn blue or white?
Please see a tos expert to evaluate the swelling.
Surgery helped me about 50% which is what Dr Annest told me pre-op
Ocgirl
__________________________________________________ ____________
"Intermittently, minor swelling and discoloration can be present; if severe, they can indicate a primary blood-vessel problem, which, though very rare, requires rapid intervention

Given this plethora of symptoms, it can be difficult to arrive at a diagnosis. Involvement of the head, neck, arms, and front and back of the chest with pain and occasional swelling produces a clinical picture that is often difficult to integrate for the inexperienced physician." W. Ellis M.D.
www.doctorellis.com
__________________________________________________ _______________

[mothy19]

Hi Jo55,

I am planning to see a physical therapist soon. In fact, didn't you mention Joyce Wilkinson on one of your postings?

I have had acupunture, some form of physical therapy, chiropractore work, and also two botox injections. Most of these caused temporary relief. I keep going back and forth with the surgery. Perhaps, I'll make my decision once I get my MRI - Arthrogram results back.

Do you suffer from TOS?

[johannakat]

Dr. Jordan is great, and so are his surgical recommendations. You are in great hands.

I don't have any pulsating lumps...I just can't do much computer, have a ton of back spasms, and can't lift my kids. During a recent left scalene block I founf out that a small portion of what I thought was my good hand is constantly numb. I already knew parts of my right hand were pretty constantly numb because I realized it during my earlier right scalene block. It is always hard for me to describe my symptoms because I am just so used to having them and modifying my activities to accomodate. However, after the same temporary relief from botox I too amd ready to move on.

I am going to be having surgery probably may 21. I have been phasing out of work over April, I am pretty sure today is my last day. I expect to be out 6 weeks to three months after each surgery. I plan to have 2, but thought I'd see how the first one went before scheduling the second.

good luck to you and please feel free to PM me with any surgeon quesitons, I have been doing a thorough review before deciding who to let cut me open and have some very definite impressions.

Best,
Johanna

[mothy19]

Hi Johanna,

Which surgeon have you selected? Dr. Ahn?

Good luck by the way!

[ocgirl]

Mothy,
I guess I'm a little confused in reading your post I thought you were saying you had swelling above the clavicle. In your post you say:

__________________________________________________ ____________

"Most of all, from time to time, I get a pulsating lump right above my right clavicle. That drives me crazy! "

__________________________________________________ __________

This pulsating lump is a serious symptom in tos. When Dr Ellis would look at mine he would tell me to take it easy until it goes down.

As a R.N. working at the bedside Drs had me stop working because it is a place where I had to do lifting, etc. There was a high risk I would further my injury if I continued. The hospital said if I couldn't push a bed or respond to a code then I couldn't do bedside nursing.

Thank you for your interest in my surgical result. Tos affects people in very different ways. Some people have mild tos and on the other side of the spectrum there are those with severe tos who are in wheelchairs and confined to their bed due to pain.

My tos was severe bilaterally. It was very debilitating. The docs said when I couldn't tolerate the pain I would know it is time for surgery. What sent me to surgery was the vascular symptoms from compression. The bilateral swelling above both clavicles which wouldn't resolve. The prominent vascular pattern on my chest.
Dr Ellis just kept saying to me as he examined me, " Oh, no. Oh, no." Yikes, not fun to hear a doc say that when they are doing their exam.

I couldn't lift my arm more than about 25 degrees from my side without pain. Dr Ellis said everytime I lifted my arm and had pain I was irritating the nerves and causing further injury.

My surgery by Dr Annest was a success according to Dr Ellis. Success is different to each person with tos. I have pretty good range of motion and Dr Annest said I didn't have any scar tissue formation. He said he thought he could make me 50% better which I believe he did.

The vascular symptoms are much improved. But if I over do it my hands will get a blue tinge so I know to stop what I'm doing and rest.

I still have a nerve injury to the dorsal scapular nerve which causes me lots of pain.

As far as work, I am not working and the docs say I probably never will due to the risk of re-injury. Tos is still pretty debilitating and I don't have much stamina. Tos has worn me down so other secondary problems have set in such as asthma and pneumonia.

I am trying to prove the docs wrong and I do hope to do some type of work. I went back to school and got my bachelors degree in health systems. I'm in a master's program for health administration at this time.

There are some who do work on this forum and I'm happy for them. I know for me that if I worked that would use all of my limited energy and set me up for re-injury.
Best wishes to you in your journey with tos.
Martha

[bigpede]

been diagnosed with tos and had rib ressection 3 weeks ago. what i am now curious about is more specific information on occluding vessels. after the usual tests that we have all endured, plus a few, it was discovered that both of my internal jugular veins were completely occluded in many positions, but always when arms were elevated. the extreme bulging and pressure in my head, face and neck during movement being the reason i sought treatment to begin with. having obvious occlusion of right and left subclavian veins the decision was made to do the rib ressection on my right side. now having had the surgery my right side my right arm has none if any symptoms at all. now for the bad part. my right phrenic nerve was [damaged] which has my diaphram elevated and paralyzed on the right side which means im breathing on one lung and sleeping with a machine to help me breath.sounds terrible huh, it gets worse. I still have to resolve the issues with the left side. and the problems with pressure that is unbearable still occures in my head,neck and face with any leaning forward or raising of the arms.I'm not making light of tos, i know how it can change someones total thoughts of life itself. I had never heard of tos,i didnt know that the way I've felt for years had a name. Now im in deep, I cant risk left side surgery, atleast not until i get something fixed with this nerve. a repeat would mean a respirator, and still the possibility of unresolved head problems. a machine at night is bad enough. I'm sorry I'm rambling but I'm stuck and frustrated and worried and yes a little scared. My dr. said that the condition with my jugular veins was so rare he or any of his partners had never encountered it before. someone please tell me that they have been through this and it will all work out just fine.